{"id":2266,"date":"2018-09-24T12:51:12","date_gmt":"2018-09-24T17:51:12","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=2266"},"modified":"2018-09-24T12:51:12","modified_gmt":"2018-09-24T17:51:12","slug":"rodrigo","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/tr\/individuals-with-lgmd-interviews\/2018\/09\/24\/rodrigo\/","title":{"rendered":"LGMD'li birey: Rodrigo"},"content":{"rendered":"

LGMD \"SPOT I\u015eI\u011eI R\u00d6PORTAJI\"<\/strong><\/span><\/p>\n

\u0130sim<\/strong><\/span>:\u00a0 Rodrigo\u00a0 Ya\u015f<\/strong>: 29 yrs. old\u00a0\u00a0\"\"<\/a><\/span><\/p>\n

\u00dclke<\/strong>: Birle\u015fik Devletler<\/span><\/p>\n

LGMD Alt Tip:\u00a0 <\/strong>LGMD2B \/ <\/span>Myoshi Miyopati<\/span><\/p>\n

Ka\u00e7 ya\u015f\u0131nda te\u015fhis konuldu?<\/strong>:<\/span><\/p>\n

Bana 24 ya\u015f\u0131ndayken LGMD2B te\u015fhisi kondu.<\/span><\/p>\n

\u0130lk belirtileriniz neydi?<\/strong>:<\/span><\/p>\n

Belirtilerim 17 ya\u015f civar\u0131nda ortaya \u00e7\u0131kt\u0131.<\/span><\/p>\n

LGMD hastas\u0131 olan ba\u015fka aile \u00fcyeleriniz var m\u0131?<\/strong><\/span><\/p>\n

Belirtiler g\u00f6steren ancak te\u015fhis konulmam\u0131\u015f 2 erkek karde\u015fim var.<\/span><\/p>\n

LGMD ile ya\u015faman\u0131n en b\u00fcy\u00fck zorluklar\u0131n\u0131n ne oldu\u011funu d\u00fc\u015f\u00fcn\u00fcyorsunuz?<\/strong>:<\/span><\/p>\n

Hareketlilik benim en b\u00fcy\u00fck zorlu\u011fum.<\/span><\/p>\n

En b\u00fcy\u00fck ba\u015far\u0131n\u0131z nedir?<\/strong>:<\/span><\/p>\n

En b\u00fcy\u00fck ba\u015far\u0131m, sanatsal yetene\u011fimin g\u00fcn \u0131\u015f\u0131\u011f\u0131na \u00e7\u0131kmas\u0131na izin vermemdir.<\/span><\/p>\n

LGMD bug\u00fcn oldu\u011funuz ki\u015fi olman\u0131zda sizi nas\u0131l etkiledi?<\/strong><\/span><\/p>\n

LGMD bug\u00fcn oldu\u011fum ki\u015fi olmamda beni b\u00fcy\u00fck \u00f6l\u00e7\u00fcde etkiledi. Hayat\u0131 tamamen farkl\u0131 bir \u015fekilde g\u00f6rmemi sa\u011flad\u0131. Beni en k\u00fc\u00e7\u00fck g\u00f6revler i\u00e7in bile kendimi s\u00fcrekli zorlamaya zorlad\u0131, bu da beni diren\u00e7li ve \u0131srarc\u0131 hale getirdi. Ayr\u0131ca bana empati yetene\u011fi kazand\u0131rd\u0131 ve ben de m\u00fccadele edenlere sempati duyabiliyorum. LGMD hayat\u0131n her y\u00f6n\u00fcn\u00fc takdir etmemi ve materyalist davran\u0131\u015flar\u0131 bir kenara b\u0131rakmam\u0131 sa\u011flad\u0131.<\/span><\/p>\n

D\u00fcnyan\u0131n LGMD hakk\u0131nda ne bilmesini istersiniz?<\/strong>:<\/span><\/p>\n

Her \u015feyden \u00f6nce d\u00fcnyan\u0131n varl\u0131\u011f\u0131m\u0131zdan haberdar olmas\u0131 gerekiyor. Limb Girdle Musk\u00fcler Distrofi tedavi edilebilir ve edilecektir ancak bunu umursayacak kadar insan bilmiyor. N\u00fcfusun k\u00fc\u00e7\u00fck bir y\u00fczdesini etkilemesi iyi bir \u015fey ama biz hayatta kalmay\u0131 ba\u015farmak isteyen nispeten b\u00fcy\u00fck bir insan grubuyuz. Biz de mutlulu\u011fun pe\u015findeyiz ancak ba\u015fkalar\u0131n\u0131n daha fazla yard\u0131m\u0131na ihtiyac\u0131m\u0131z var. D\u00fcnyan\u0131n bizim hala elimizden gelen katk\u0131y\u0131 sa\u011flad\u0131\u011f\u0131m\u0131z\u0131 bilmesi gerekiyor. A\u011fz\u0131m\u0131za bir par\u00e7a ekmek koyabilmek i\u00e7in bile m\u00fccadele ediyoruz, ancak bu zorluklar\u0131 kabul ettik ve g\u00fc\u00e7l\u00fc olmak bizim tek ya\u015fam bi\u00e7imimiz haline geldi.<\/span><\/p>\n

LGMD hastal\u0131\u011f\u0131n\u0131z yar\u0131n \"tedavi edilebilseydi\", yapmak isteyece\u011finiz ilk \u015fey ne olurdu?<\/strong>:<\/span><\/p>\n

\u0130yile\u015fmek i\u00e7in en h\u0131zl\u0131 yolu se\u00e7erdim. Forest Gump'\u0131n yapt\u0131\u011f\u0131 gibi ko\u015fmaya ba\u015flard\u0131m. Yoluma \u00e7\u0131kan herkese, genel sa\u011fl\u0131k konusunda fark\u0131ndal\u0131k yaratmak ve ne kadar \u00e7ok \u015feyi hafife ald\u0131\u011f\u0131m\u0131za dikkat \u00e7ekmek amac\u0131yla yeniden hareket etmeyi ne kadar takdir etti\u011fimi s\u00f6ylerdim. Sa\u011fl\u0131kl\u0131 bir insan\u0131n hafife ald\u0131\u011f\u0131 her ad\u0131m\u0131, Musk\u00fcler Distrofisi olan bir ki\u015fi atabilmeyi diler.<\/span><\/p>\n

 <\/p>\n

Daha fazla \"LGMD Spotlight R\u00f6portaj\u0131\" okumak veya gelecek bir r\u00f6portajda yer almak i\u00e7in g\u00f6n\u00fcll\u00fc olmak i\u00e7in l\u00fctfen web sitemizi ziyaret edin https:\/\/www.lgmd-info.org\/spotlight-interviews<\/a><\/span><\/p>\n

 <\/p>\n

 <\/p>","protected":false},"excerpt":{"rendered":"

LGMD “SPOTLIGHT INTERVIEW” Name:\u00a0 Rodrigo\u00a0 Age: 29 yrs. old\u00a0\u00a0 Country: […]<\/p>","protected":false},"author":1,"featured_media":2265,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,22],"tags":[87],"class_list":["post-2266","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2b","tag-lgmd2b-united-states"],"acf":[],"yoast_head":"\nIndividual with LGMD: Rodrigo - LGMD Awareness Foundation<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"http:\/\/www.lgmd-info.org\/tr\/individuals-with-lgmd-interviews\/2018\/09\/24\/rodrigo\/\" \/>\n<meta property=\"og:locale\" content=\"tr_TR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Individual with LGMD: Rodrigo - 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